Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

Follow-up article NY Times 10/13/09

Is a Virus the Cause of Fatigue Syndrome?
Science Times, D1
The New York Times, October 13, 2009

Could a virus be the cause of chronic fatigue syndrome?

A study published last week in the journal Science suggested that might be the case, reporting that many patients who had the syndrome were infected with a recently discovered virus.

Chronic fatigue syndrome has long been a medical mystery and the subject of debate, sometimes bitter, among doctors, researchers and patients. It affects at least one million Americans, causing extreme fatigue, muscle and joint pain, sleep problems, difficulty concentrating and other symptoms. Its cause is unknown, symptoms can last for years and there is no effective treatment. Researchers disagree about whether it is one disease or a collection of symptoms that may have different causes in different patients. It has sometimes been stigmatized as more mental than physical, with patients labeled neurotic, depressed or hypochondriacal. Many patients find even the name of the disorder offensive, a not-so-subtle hint that it is not a real disease.

The new report has intrigued scientists, been seen as vindication by some patients and inspired hope for a treatment.

I just feel like the whole future has changed for us, said Anne Ursu, 36, a writer living in Cleveland who has had the syndrome in the past.

But the new study is not conclusive, and a great deal of work remains to be done to find out whether the new virus really does play a role. Just detecting it in patients does not prove it is what made them sick; people with the syndrome may have some other underlying problem that makes them susceptible to the virus, which could be just a passenger in their cells.

Even so, thousands of patients have already contacted scientists, asking to be tested, said Dr. Judy Mikovits, the first author of the study and the research director at the Whittemore Peterson Institute in Reno, a research center created by the parents of a woman who has the syndrome. Dr. Mikovits said she expected a test to become available within weeks.

The new suspect is a xenotropic murine leukemia virus-related virus, or XMRV, which probably descended from a group of viruses that cause cancer in mice. How or when XMRV found its way into humans is unknown. But it has also been linked to cancer in people: it was first identified three years ago, in prostate cancer, and later detected in about one-quarter of biopsies from men with that disease (and in only 6 percent of benign biopsies). It is a retrovirus, from the same notorious family that causes AIDS and leukemia in people.

Dr. Mikovits and researchers from the National Cancer Institute and the Cleveland Clinic reported in Science that 68 of 101 patients with chronic fatigue syndrome, or 67 percent, were infected with XMRV, compared with only 3.7 percent of 218 healthy control subjects. Further testing after the paper was written found the virus in nearly 98 percent of about 300 patients with the syndrome, Dr. Mikovits said.

She said she believed that the virus would eventually be found in every patient with chronic fatigue syndrome. XMRV affects the immune system, can probably cause a variety of illnesses and may join forces with other viruses to bring on the syndrome, she said.

The study received a mixed review from Dr. William C. Reeves, who directs public health research on the syndrome at the Centers for Disease Control and Prevention. He called the research exciting but preliminary, and said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.

If I dont know the nature of the cases and controls, I cant interpret the findings, Dr. Reeves said.

We and others are looking at our own specimens and trying to confirm it, he said, adding, If we validate it, great. My expectation is that we will not.

He noted that there had been false starts before, including a study in the 1990s linking the syndrome to another retrovirus, which could not be confirmed by later research.

Many patients and a community of doctors and researchers who specialize in the syndrome take issue with the disease centers approach to the illness and the way it defines who is affected. They claim that the C.D.C. includes people whose problems are purely psychiatric, muddying the water and confounding efforts to find a physical cause.

Frustration with the lack of answers led Annette and Harvey Whittemore, whose 31-year-old daughter has had the syndrome for 20 years, to spend several million dollars to set up a research institute at the University of Nevada in Reno in 2004, and to hire Dr. Mikovits to direct it.

Mrs. Whittemore said she had long believed that the syndrome was an infectious disease, but that scientists had rejected the idea.

She finally decided, she said, if there was a place of our own where we could find the answers, we could do it more quickly.

Dr. William Schaffner, an infectious disease expert at Vanderbilt University, said that the notion of a lingering viral infection was plausible. He said that although some patients claiming to have the syndrome seemed more likely to have a psychological problem, others seemed to have a physical illness.

There is a group who are young, healthy, active and engaged, and all of a sudden they are laid low by something, Dr. Schaffner said. Everyone tells the physicians these are people who are functional and productive, and this is totally out of character. They are frustrated and often quite disheartened. You feel that medical science hasnt caught up with their illness yet.

To determine whether XMRV is to blame, more studies are needed, said Dr. John Coffin, a professor of molecular biology and microbiology at Tufts University. It would help to find an animal model, he said, and to look at stored blood samples to find out if there were people who became ill some set amount of time after contracting the virus. If antiviral drugs make patients improve, that will also help make the case against the virus, he said.

The National Cancer Institute is taking XMRV seriously, said Dr. Stuart Le Grice, head of its Center of Excellence in HIV/AIDS and Cancer Virology.

He said health officials became especially concerned last spring when several research teams looking at prostate cancer reported finding XMRV in 3 percent to 4 percent of blood samples from healthy people in control groups. That could translate into 10 million American being infected with a newly discovered, poorly understood retrovirus that has already been linked to two diseases.

Any virus at that level is obviously cause for concern, Dr. Le Grice said, adding that it was important to find out if the virus was associated with any more diseases, and how closely.

He said that just carrying the virus did not necessarily mean a person was at high risk for disease, noting that people may harbor other viruses that will never harm them. The immune system probably keeps the viruses in check.

But he asked: If it is a problem, how well can we diagnose it and how well can we treat it?

Even though antiretroviral drugs have already been developed to treat H.I.V. infection, he said this virus was different and might need its own line of drugs.

He said more studies were needed to find out how common the virus is and how it is being transmitted. It is not known whether people can catch the disease from mice, or can infect one another. Retroviruses are often spread by blood and bodily fluids.

How significant a risk is this to blood banks? Dr. Le Grice asked. Do we need to consider large-scale screening in blood banks?

He said the institute would be working to develop reliable diagnostic tests.

Dr. Le Grice emphasized that there is no evidence that the virus is spreading through the population.

I'm having some changes of feeling about this. I wish they had confirmed some of the research before sharing it! My fear is that if the retrovirus study isn't validated, it will set back CFS for years. Reading the comment by Dr. Reeves, I remembered why I had long given up on following CFS research.

I agree, Robin, this is a very unsettling time for us, no matter how you interpret all this.

We all have a lot riding on this high stakes poker game that is going on right now. Sometimes I wish I could just turn off the computer and the tv and just wait until everything has all been settled one way or another.

I was reading through different websites and caught this quote...... Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control.

Thats why there were two different results in the tests. 68% of the people with CFS have LIVE virus, while only 4% of healthy controls have LIVE virus. Then the other antibody test showed 30% of people with CFS have the virus but thier immune system has it under control. So the most important question is how many healthy people have the virus but their immune systems have it under control with the antibody testing. This virus could be really prevelent and it may be more of a factor of how our immune systems deal with the virus. Those antiviral medications may only help the people with live virus.

Thanks Robin and Richie for your comments. I have been feeling the exact same way and have been overwhelmed with researching the research. It can be a rollercoaster. I appreciate you sharing your thoughts and feelings, it helps to know that I'm not alone. Thanks.

The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection. This novel retrovirus could easily shift the redox state just like HIV as published in (2001) and (1995) and induce all manner of associated pathogens as seen in CFS,,,,. A redox shift could ultimately corrupt the gut ecology and create P450 decoupling based on NADPH depletion observed in CFS and lead to environmental illness as well. Time will tell but I think Dr. Mikovits is right to suspect causality.

The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection. This novel retrovirus could easily shift the redox state just like HIV as has been published in (2001) and (1995) and induce all manner of associated pathogens as seen in CFS. A redox shift could ultimately corrupt the gut ecology and create P450 decoupling based on NADPH depletion observed in CFS and lead to environmental illness as well. Time will tell but I think Dr. Mikovits is right to suspect causality. I also think this virus is infectious with at least ten million Americans infected who appear healthy and perhaps another four million Americans or more with CFS as recently estimated by the CDC (2007). However, disease expression may be more limited causing the illusion that it is not infectious. Furthermore, there may be other diseases that are similar and dissimilar to CFS that are associated with if not caused by XMRV.

Re; disagreement from the CDC. Remember, these are the good folks who diverted &quot;our&quot; funding back in the 80's. I don't think they have a lot of nice things to say about us.

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